New to the group

[Guest guest]

erika- there is hope here. there is friendship here. there are strong shoulders

here. most of all there is love here. reach out. ask questions. express

yourself. together we can and do overcome much more than we could walking this

walk alone. virtual strangers are loving me and my family though this. it is the

highest compliment to give of oneself with no expectation. these " srangers " are

the finest human beings I have ever had the good fortune to meet.

welcome...angela

New to the group

Hello. Thanks to Ann from England, my husband and I have been finally

able to join a fantastic group. We have been on the net now for many

hours reading a lot of your posted messages. My husband, who is 41

was just diagnosed (after almost a year of suffering). We are

currently looking into the treatment, basically myotomy. It has been

very interesting and frightening to read about living with achalasia,

but knowing is still better than not knowing. My husband is scared

for what's in store for him (long-term), but I hope that with your

support we will be OK.

[Guest guest]

Welcome to the group you will gets lots of advice and support here.

 

Ask as many questions as you like someone will be able to help.

 

Pippa (one of Ann's side kicks across the water in the UK!!)

[Guest guest]

a-Hi and Welcome! Yes you both will be ok.We are all here for

you 100%.I found this board over 2 years ago when my then 12 year

old son was diagnosed.This board and all its members have been a God

send! I dont know what I would have done without them.they gave me

direction,answers,and support and with all that it got me with a

specialist and my son doing great and living a normal life again.

So....Your going to be just fine.Please post any and all questions

and there is always someone here to help! Welcome and do keep us

updated!

Tonia in Va

>

> Hello. Thanks to Ann from England, my husband and I have been

finally

> able to join a fantastic group. We have been on the net now for

many

> hours reading a lot of your posted messages. My husband, who is

41

> was just diagnosed (after almost a year of suffering). We are

> currently looking into the treatment, basically myotomy. It has

been

> very interesting and frightening to read about living with

achalasia,

> but knowing is still better than not knowing. My husband is

scared

> for what's in store for him (long-term), but I hope that with your

> support we will be OK.

>

[Guest guest]

Welcome and to your husband, too.

 

I had a Hellers Myotomy in January of 2006 and I'm doing really well.

I wish you successes in finding good information and help here, that's

what I get, as well as hearing stories of others and how they manage.

It's an excellent group and Ann from England is a sweetie.

 

Best in 2009, Deborah at the beach

[Guest guest]

Welcome, Terri!

My dd (16) was just diagnosed last fall with

scoliosis. I know that things can be pretty

overwhelming in the initial stages when you just find

out.

What did the doctors say about the treatment they

have planned for your dd?

You will find lots of support here!

Take care,

n

------- Original Message -------

From : Terri[mailto:tterrii@...]

Sent : 2/2/2009 12:36:20 PM

To : Scoliosis Treatment

Cc :

Subject : RE: New to the group

Hi I am new to the group. My 11 year old daughter

was just diagnosed with

scoliosis this past Friday it was quite a shock to

us, she has been a very

normal kid with no medical issues. Her curves were

measured at 32 lower and

42 upper.

Thanks for letting me join.

Terri

[Guest guest]

Welcome Terri! Sorry to hear about your daughter. I was that little

girl once and it is hard on both her and you, as the parents. But,

there is hope and everyone on this list is here to help.

>

> Hi I am new to the group. My 11 year old daughter was just diagnosed

with

> scoliosis this past Friday it was quite a shock to us, she has been a

very

> normal kid with no medical issues. Her curves were measured at 32

lower and

> 42 upper.

> Thanks for letting me join.

>

> Terri

>

>

>

[Guest guest]

Terri,

Welcome you will learn a lot hear, but there are some great books you should

get (Amazon used is a good place to look) Scoliosis Ascending the Curve by

Lyons, and if surgery is the dx then Scoliosis Handbook by Neuwirth and

Scolosis Surgery by Wolpert would be next. The first was written by a young

dancer who has scoliosis...it's a great overview.

It's all scarey at first, but once you get the idea of preventing more

progression you'll overcome your fear and do what is best for your daughter.

Jolene

**************Stay up to date on the latest news - from sports scores to

stocks and so much more. (http://aol.com?ncid=emlcntaolcom00000022)

[Guest guest]

Welcome, Terry.  I've sorry to hear this about your little girl.  There is so

much you are going to learn.  But, this is something that you can't learn on

your own, so I'll tell it here.

 

When buying clothes for her, don't try to get clothes to hide the deformity, if

a rib hump shows (like Quasimodo).  She will learn to live with it like it's a

normal part of her body that doesn't need special clothes.  Include a bathing

suit.  Don't make mention of the scoli much, either, or she may dwell on it. 

The idea is for her to know she has it, but not let it take any of her living

away or her self image.  Treat it like it's not there. 

 

Of course, there will be medical attention.  But, I mean besides that.

 

Lj

From: Terri <tterrii@...>

Subject: New to the group

" Scoliosis Treatment " <Scoliosis Treatment >

Date: Monday, February 2, 2009, 12:36 PM

Hi I am new to the group. My 11 year old daughter was just diagnosed with

scoliosis this past Friday it was quite a shock to us, she has been a very

normal kid with no medical issues. Her curves were measured at 32 lower and

42 upper.

Thanks for letting me join.

Terri

[Guest guest]

Thanks LJ it has been a tough couple of weeks for us. She gets her brace

this Friday so I am sure that will be a tough day for all of us. I did tell

her we would go shopping next Sat because I am not sure how it will affect

her clothes she wears. The jeans she wears are skinny jeans so I am not sure

if they will work with the brace it will be a learning process for all of

us. Thank you for the advice I only talk about it if she brings it up and

have explained that it will take her some time to get used to the brace and

how it feels on her. I also read that yoga is good for scoliosis so we have

talked about taking a yoga class together but I am going to check with her

doctor first.

Terri

On Sat, Feb 7, 2009 at 6:52 PM, Lana Jarvis <fyfer1949@...> wrote:

> Welcome, Terry. I've sorry to hear this about your little girl. There

> is so much you are going to learn. But, this is something that you can't

> learn on your own, so I'll tell it here.

>

> When buying clothes for her, don't try to get clothes to hide the

> deformity, if a rib hump shows (like Quasimodo). She will learn to live

> with it like it's a normal part of her body that doesn't need special

> clothes. Include a bathing suit. Don't make mention of the scoli much,

> either, or she may dwell on it. The idea is for her to know she has it, but

> not let it take any of her living away or her self image. Treat it like

> it's not there.

>

> Of course, there will be medical attention. But, I mean besides that.

>

> Lj

>

>

>

> From: Terri <tterrii@... <tterrii%40gmail.com>>

> Subject: New to the group

> " Scoliosis Treatment "

<Scoliosis Treatment <Scoliosis Treatment%40>

> >

> Date: Monday, February 2, 2009, 12:36 PM

>

>

> Hi I am new to the group. My 11 year old daughter was just diagnosed with

> scoliosis this past Friday it was quite a shock to us, she has been a very

> normal kid with no medical issues. Her curves were measured at 32 lower and

> 42 upper.

> Thanks for letting me join.

>

> Terri

>

>

[Guest guest]

Terri, I have had 3 surgeries for scoliosis and my daughter wore a

brace for 2 years. I don't know how they are made now but hers was a

plastic contraption with the buckles in the back of it. If that's

till the case I hope and pray that you truly do well with it. It was

very very difficult to fasten up my daughter in it but it had to be

done. She was really a trooper though. wore hers for 2 years

until she could wear it no longer. I have one piece of advice. If the

brace fits extremely tight under your daughters breast keep that

checked out. In my daughters case it kept her left breast from

developing at all and the other one did " double duty " . She had to

have an implant and reduction later on. Please know that I am not

trying to scare you but to warn you what you may be up against. You

have support here and you have prayers. It's never easy all the time

being a mother. You have to do things that hurt you but we love our

kids and want the best for them even if they don't see it that way.

Be blessed and know that you are not alone. Dereise.........

> >

> > From: Terri <tterrii@... <tterrii%40gmail.com>>

> > Subject: New to the group

> > " Scoliosis Treatment " <Scoliosis-

Medical <Scoliosis Treatment%40>

> > >

> > Date: Monday, February 2, 2009, 12:36 PM

> >

> >

> > Hi I am new to the group. My 11 year old daughter was just

diagnosed with

> > scoliosis this past Friday it was quite a shock to us, she has

been a very

> > normal kid with no medical issues. Her curves were measured at 32

lower and

> > 42 upper.

> > Thanks for letting me join.

> >

> > Terri

> >

> >

[Guest guest]

I would also add that give your girl some choices and let her participate in

the office visits and treatments. As a parent you can limit the choices that

your daughter is allowed to make but it will help with her over-all

self-esteem. It will also give her the knowledge in future follow-ups and if

other medical issues come up in the future. If no one has mentioned it yet,

get copies of her medical records, including x-rays and, if there's surgery,

the surgical notes. Most of these are allowed to be destroyed after so many

years and they are her's under the Freedom of Information Act.

My parents had me involved right from the beginning, even though I didn't

understand much in the beginning at the age of 8-9. But I have developed no

anger against my parents or the system since I was given limited choices and

the best treatment available at the time. Others that I have spoken with,

whose parents kept them in the dark, do harbour resent and greater

self-esteem issues. I believe it was the result of the fear of the unknown.

If she knows what is going on, the pros and cons of treatment, then she will

be in a better position to deal with this the best she can, even though she

may have some fear but she will be informed. She may even surprise you and

be more mature about this situation than you think she will be.

There are children message boards, that she might find helpful in talking

with others in similar situations. Even ask at your specialist's office if

there is a support group that she might be interested in, or a Youth Mentor.

Like anyone who has a newly diagnosed disease/condition, she may be in

denial for the first while, but this is normal. She wants to remain like her

peers. The message boards might be a safe, comfortable way for her to deal

with her new situation. The National Scoliosis Foundation, www.scoliosis.org

, have various types of message boards like one for children, parents, etc.

as a starting point for specific support. This is also a good board to get

some general information. We are all here to help where we can.

Llweyn

From: Terri <tterriigmail (DOT) <mailto:tterrii%40gmail.com> com>

Subject: New to the group

" Scoliosis Treatment " <Scoliosis Treatment@

<mailto:Scoliosis Treatment%40> >

Date: Monday, February 2, 2009, 12:36 PM

Hi I am new to the group. My 11 year old daughter was just diagnosed with

scoliosis this past Friday it was quite a shock to us, she has been a very

normal kid with no medical issues. Her curves were measured at 32 lower and

42 upper.

Thanks for letting me join.

Terri

[Guest guest]

Thank you so much Dereise, I will keep you updated to how Friday goes.

Terri

On Sun, Feb 8, 2009 at 11:27 PM, Dereise <dereise1958@...> wrote:

> Terri, I have had 3 surgeries for scoliosis and my daughter wore a

> brace for 2 years. I don't know how they are made now but hers was a

> plastic contraption with the buckles in the back of it. If that's

> till the case I hope and pray that you truly do well with it. It was

> very very difficult to fasten up my daughter in it but it had to be

> done. She was really a trooper though. wore hers for 2 years

> until she could wear it no longer. I have one piece of advice. If the

> brace fits extremely tight under your daughters breast keep that

> checked out. In my daughters case it kept her left breast from

> developing at all and the other one did " double duty " . She had to

> have an implant and reduction later on. Please know that I am not

> trying to scare you but to warn you what you may be up against. You

> have support here and you have prayers. It's never easy all the time

> being a mother. You have to do things that hurt you but we love our

> kids and want the best for them even if they don't see it that way.

> Be blessed and know that you are not alone. Dereise.........

>

>

> > >

> > > From: Terri <tterrii@... <tterrii%40gmail.com>>

> > > Subject: New to the group

> > > " Scoliosis Treatment " <Scoliosis-

> Medical <Medical%40><Scoliosis Treatment%

> 40>

> > > >

> > > Date: Monday, February 2, 2009, 12:36 PM

> > >

> > >

> > > Hi I am new to the group. My 11 year old daughter was just

> diagnosed with

> > > scoliosis this past Friday it was quite a shock to us, she has

> been a very

> > > normal kid with no medical issues. Her curves were measured at 32

> lower and

> > > 42 upper.

> > > Thanks for letting me join.

> > >

> > > Terri

> > >

> > >

[Guest guest]

Hi!

That's what we did, i promised her new clothes but it was a frustrating

experience,and we left with one shirt. pants fit entirely different,and there

way bigger. We did go to macys eventually and found a lot of pants that fit,but

they slide and i'm always having to tell my 12 year old to pull her pants up.

Baby doll shirts work great,you cannot even tell she's wearing a brace,but shes

not even worried if you do!

Night times were the worse. My daugters had her since Dec,and it took weeks for

her to build up to 20 hours but shes does fine now.

Jennie

New to the group

> " Scoliosis Treatment " < Scoliosis Treatment

<Scoliosis Treatment%40>

> >

> Date: Monday, February 2, 2009, 12:36 PM

>

>

> Hi I am new to the group. My 11 year old daughter was just diagnosed with

> scoliosis this past Friday it was quite a shock to us, she has been a very

> normal kid with no medical issues. Her curves were measured at 32 lower and

> 42 upper.

> Thanks for letting me join.

>

> Terri

>

>

[Guest guest]

In a message dated 2/9/2009 8:55:29 A.M. Eastern Standard Time,

dereise1958@... writes:

Terri, I have had 3 surgeries for scoliosis and my daughter wore a

brace for 2 years. I don't know how they are made now but hers was a

plastic contraption with the buckles in the back of it. If that's

till the case I hope and pray that you truly do well with it. It was

very very difficult to fasten up my daughter in it but it had to be

done. She was really a trooper though. wore hers for 2 years

until she could wear it no longer. I have one piece of advice. If the

brace fits extremely tight under your daughters breast keep that

checked out. In my daughters case it kept her left breast from

developing at all and the other one did " double duty " . She had to

have an implant and reduction later on. Please know that I am not

trying to scare you but to warn you what you may be up against. You

have support here and you have prayers. It's never easy all the time

being a mother. You have to do things that hurt you but we love our

kids and want the best for them even if they don't see it that way.

Be blessed and know that you are not alone. Dereise.....Be b

> >

> > From: Terri <tterrii@... <tterrii%40gmail.tte>>

> > Subject: New to the group

> > " Scoliosis Treatment " <Scoliosis-

_Medical@groupsMedi_ (mailto:Medical )

<Scoliosis Treatment%Scoliosis-MediSco>

> > >

> > Date: Monday, February 2, 2009, 12:36 PM

> >

> >

> > Hi I am new to the group. My 11 year old daughter was just

diagnosed with

> > scoliosis this past Friday it was quite a shock to us, she has

been a very

> > normal kid with no medical issues. Her curves were measured at 32

lower and

> > 42 upper.

> > Thanks for letting me join.

> >

> > Terri

> >

> > [Non-text portions of this message have been removed]

> >

> > [Non-text portions of this message have been removed]

> >

> >

> >

>

>

> [Non-text portions of this message have been removed]

>

**************The year's hottest artists on the red carpet at the Grammy

Awards. AOL Music takes you there.

(http://music.aol.com/grammys?ncid=emlcntusmusi00000002)

[Guest guest]

Dear Terri,

I had 3 scoliosis surgeries and my daughter also wore a brace. She wore the

Spinecore brace and it worked for her. It is a hard plastic base that goes

around the pelvis with big elastic type straps that are fitted and pulled so

that the spine is being pulled to the right correction. I know it doesn't

work for everyone and your doctor must work hand in hand with the prosthetic

technician and they really have to know what they are doing. I live on Long

Island and traveled into New York City at Hospital for Special Surgery and Dr.

Boachie. It is less restrictive than the hard braces. I wore the hard brace

after my first surgery for 3 months during the summer and it was quite

unpleasant. The strap brace is not fun either but can be hidden a little

easier

with baggy clothes. My daughter was able to dance in hers but it was also

uncomfortable at times. My heart goes out to you. When she had her

appointment

to get fitted for the brace (which is an all day process with this brace)

she also got her period for the first time. Talk about a traumatic day in her

life. She cried all the way home from the city (and I cried when I got

home), I am happy to say she is now in college and it is all a distant memory.

I hope this helps.

Kathy

In a message dated 2/9/2009 8:55:29 A.M. Eastern Standard Time,

dereise1958@... writes:

Terri, I have had 3 surgeries for scoliosis and my daughter wore a

brace for 2 years. I don't know how they are made now but hers was a

plastic contraption with the buckles in the back of it. If that's

till the case I hope and pray that you truly do well with it. It was

very very difficult to fasten up my daughter in it but it had to be

done. She was really a trooper though. wore hers for 2 years

until she could wear it no longer. I have one piece of advice. If the

brace fits extremely tight under your daughters breast keep that

checked out. In my daughters case it kept her left breast from

developing at all and the other one did " double duty " . She had to

have an implant and reduction later on. Please know that I am not

trying to scare you but to warn you what you may be up against. You

have support here and you have prayers. It's never easy all the time

being a mother. You have to do things that hurt you but we love our

kids and want the best for them even if they don't see it that way.

Be blessed and know that you are not alone. Dereise.....Be b

> >

> > From: Terri <tterrii@... <tterrii%40gmail.tte>>

> > Subject: New to the group

> > " Scoliosis Treatment " <Scoliosis-

_Medical@groupsMedi_ (mailto:Medical )

<Scoliosis Treatment%Scoliosis-MediSco>

> > >

> > Date: Monday, February 2, 2009, 12:36 PM

> >

> >

> > Hi I am new to the group. My 11 year old daughter was just

diagnosed with

> > scoliosis this past Friday it was quite a shock to us, she has

been a very

> > normal kid with no medical issues. Her curves were measured at 32

lower and

> > 42 upper.

> > Thanks for letting me join.

> >

> > Terri

> >

> > [Non-text portions of this message have been removed]

> >

> > [Non-text portions of this message have been removed]

> >

> >

> >

>

>

> [Non-text portions of this message have been removed]

>

**************The year's hottest artists on the red carpet at the Grammy

Awards. AOL Music takes you there.

(http://music.aol.com/grammys?ncid=emlcntusmusi00000002)

[Guest guest]

It really is a blessing that this board is here for support. We don't

like to dwell on the bad that happens to us and even worse our children

but these things do happen. In the past I would bury my head in the

covers when gloomy things came upon me but now I know I have to face

them head on or little at a time. I have mental issuses as well as

scoliosis. The surgeries made all that worse but with the support here

it's been easier.

There is not much that's good about scoliosis except the great friends

you meet. Mother's and father's, get all the support you can from

people that truly know what you and your child are going through. It's

not easy so try and accept it so you can get the best help for your

children. If you have scoliosis, don't be afraid because there is so

much more information than when I had my first surgery in 1996. I tell

people that everybody has something that's a challenge in their life

and this is mine but it's only one of my challenge's.

I pray for all of you, Dereise..........

>

> Hi I am new to the group. My 11 year old daughter was just diagnosed

with

> scoliosis this past Friday it was quite a shock to us, she has been a

very

> normal kid with no medical issues. Her curves were measured at 32

lower and

> 42 upper.

> Thanks for letting me join.

>

> Terri

>

>

>

[Guest guest]

Hi Adam

I'm from Edinburgh too. Do you go to the RIE? My hubby is 39,

started symptoms over 10 years ago, but didn't seek medical advice

till 2003 when he lost weight through being unable to keep

food/fluids down. It took ages to get a diagnosis. One consultant

gastroenterologist told him it was in his head!

Finally after a diagnosis things got rolling and I did the research

myself. It is so much more enlightening actually speaking to people

who have the illness in message boards like this. Very helpful!

I was deflated to learn at the start that achalasia was degenerative

and progressive and couldn't imagine having to live with this... so

I kept on looking online to see the worst case scenarios for the

future, what we might expect, the risks of cancer etc. It makes for

heavy reading but I am the wife so I need to know!

Since diagnosis he's had 5 balloon dilations and 2 botox which

don't seem to help at all when it comes to surgery, ie myotomy,

resection or -ectomy, because it weakens and scars the tissue. They

only gave temporary relief too so it all seems pointless if in the

long term they only complicate matters.

He had an inpatient stay in hospital for 8 days recently because of

the spasms. It was too much for him to cope with.

Now he is awaiting surgery for a myotomy, but we're going to Glasgow

for a 2nd opinion first. His worst symptom is chest pains or spasms,

he also has regurgitation issues and swallowing difficulties. He

burps a lot and has severe chest pains, also produces " gloop " a

thickish, foamy clear fluid.

Most people do seem to have a degree of having their symptoms

relieved with a myotomy. 90% sounds like a high figure for

successful swallowing. It depends on the skill of the surgeon, the

state of the oesophagus and how you heal.

Some studies show people do not require an ectomy for over 10 years

after myotomy. Some people need dialations or their myotomy re-done.

Some people will have to have oesophagectomy at some point. Others I

have read about have been symptom-reduced for years after their

myotomy.

Sorry for rambling on but I hope something in there helps.

[Guest guest]

Adam wrote:

> ... but their data doesn't seem to follow people beyond 5 years).

>

Below are some links to long-term studies. Those that have been around a

while have seen these before.

notan

Long-term outcome and risk of oesophageal cancer after surgery for

achalasia. 2008

http://www.ncbi.nlm.nih.gov/pubmed/18991316

Life expectancy, complications, and causes of death in patients with

achalasia: results of a 33-year follow-up investigation 2007

http://www.eurojgh.com/pt/re/ejgh/abstract.00042737-200810000-00002.htm

Long-term results after Heller-Dor operation for oesophageal achalasia. 2006

http://www.ncbi.nlm.nih.gov/pubmed/16675239

Transthoracic Heller myotomy for esophageal achalasia: analysis of

long-term results. 2006

http://www.ncbi.nlm.nih.gov/pubmed/16731127

*Long-term outcome of myotomy and semi-fundoplication in achalasia*

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

2242980 & dopt=Abstract

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

12242980 & dopt=Abstract>

" median duration of follow-up was 88 months (range: 12-160 months) "

*Pneumatic balloon dilatation in primary achalasia: the long-term

follow-up results.*

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

5816461 & dopt=Abstract

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

15816461 & dopt=Abstract>

" In the postdilatation period, mean short-term (< 1 year) and long-term

(2-7 years) clinical improvement was 82.8% and 66.85% respectively. "

*Long-term outcome of pneumatic dilation in the treatment of achalasia.*

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

5667481 & dopt=Abstract

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

15667481 & dopt=Abstract>

" Although 51.4% of patients continued to be in clinical remission more

than 15 yr after the initial pneumatic dilation, the long-term success

rate of pneumatic dilation seems to drop progressively with time. "

*Long-term outcome of achalasia treatment: the need for closer

follow-up.* Torbey CF, Achkar E, Rice TW, Baker M, Richter JE.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

0078819 & dopt=Abstract

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

10078819 & dopt=Abstract>

" Failure rates were high, respectively 74% and 67%. Importantly, 38% of

PD and 33% of SM patients failed to seek help despite symptom recurrence. "

*Short-term and long-term results of endoscopic balloon dilation for

achalasia: 12 years' experience.*

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

5280973 & dopt=Abstract

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

15280973 & dopt=Abstract>

" cumulative success rates for pneumatic dilation after 5 and 19 years

were 74 % and 62 %, respectively. "

*Long term results of pneumatic dilation in achalasia followed for more

than 5 years.*

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

2094848 & dopt=Abstract

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

12094848 & dopt=Abstract>

" The long term success rate of pneumatic dilation is rather low,

resulting in permanent successful treatment of achalasia in only 40-50%

of patients. "

*Long-term results of surgery for childhood achalasia.*

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=9\

422870 & dopt=Abstract

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

9422870 & dopt=Abstract>

*

Long-term outcome of laparoscopic Heller-Dor surgery for esophageal

achalasia: possible detrimental role of previous endoscopic treatment.*

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

6332491 & dopt=Abstract

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

16332491 & dopt=Abstract>

*Clinical profile and long-term outcome in children with esophageal

achalasia*

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

5808427 & dopt=Abstract

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

15808427 & dopt=Abstract>

*Long-term results of pneumatic dilation for achalasia: a 15 years'

experience.*

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

6237769 & dopt=Abstract

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

16237769 & dopt=Abstract>

*Long-term results of laparoscopic Heller myotomy with partial

fundoplication for the treatment of achalasia.*

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

6307937 & dopt=Abstract

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

16307937 & dopt=Abstract>

*Very late results of esophagomyotomy for patients with achalasia:

clinical, endoscopic, histologic, manometric, and acid reflux studies in

67 patients for a mean follow-up of 190 months.*

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

6432352 & dopt=Abstract

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

16432352 & dopt=Abstract>

[Guest guest]

Hi, I just wanted to say thanks a lot for these. Seeing as how what I spend

most of my day doing at the moment is reading scientific papers anyway it's nice

to be able to add in a few of these and the solidity that they provide is

something I find quite comforting.

Adam

> achalasia

> From: notan_ostrich@...

> Date: Wed, 11 Feb 2009 22:14:27 -0700

> Subject: Re: New to the group

>

> Adam wrote:

> > ... but their data doesn't seem to follow people beyond 5 years).

> >

> Below are some links to long-term studies. Those that have been around a

> while have seen these before.

>

> notan

>

>

> Long-term outcome and risk of oesophageal cancer after surgery for

> achalasia. 2008

> http://www.ncbi.nlm.nih.gov/pubmed/18991316

>

> Life expectancy, complications, and causes of death in patients with

> achalasia: results of a 33-year follow-up investigation 2007

> http://www.eurojgh.com/pt/re/ejgh/abstract.00042737-200810000-00002.htm

>

> Long-term results after Heller-Dor operation for oesophageal achalasia. 2006

> http://www.ncbi.nlm.nih.gov/pubmed/16675239

>

> Transthoracic Heller myotomy for esophageal achalasia: analysis of

> long-term results. 2006

> http://www.ncbi.nlm.nih.gov/pubmed/16731127

>

> *Long-term outcome of myotomy and semi-fundoplication in achalasia*

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

2242980 & dopt=Abstract

>

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

12242980 & dopt=Abstract>

> " median duration of follow-up was 88 months (range: 12-160 months) "

>

> *Pneumatic balloon dilatation in primary achalasia: the long-term

> follow-up results.*

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

5816461 & dopt=Abstract

>

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

15816461 & dopt=Abstract>

> " In the postdilatation period, mean short-term (< 1 year) and long-term

> (2-7 years) clinical improvement was 82.8% and 66.85% respectively. "

>

> *Long-term outcome of pneumatic dilation in the treatment of achalasia.*

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

5667481 & dopt=Abstract

>

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

15667481 & dopt=Abstract>

> " Although 51.4% of patients continued to be in clinical remission more

> than 15 yr after the initial pneumatic dilation, the long-term success

> rate of pneumatic dilation seems to drop progressively with time. "

>

> *Long-term outcome of achalasia treatment: the need for closer

> follow-up.* Torbey CF, Achkar E, Rice TW, Baker M, Richter JE.

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

0078819 & dopt=Abstract

>

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

10078819 & dopt=Abstract>

> " Failure rates were high, respectively 74% and 67%. Importantly, 38% of

> PD and 33% of SM patients failed to seek help despite symptom recurrence. "

>

> *Short-term and long-term results of endoscopic balloon dilation for

> achalasia: 12 years' experience.*

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

5280973 & dopt=Abstract

>

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

15280973 & dopt=Abstract>

> " cumulative success rates for pneumatic dilation after 5 and 19 years

> were 74 % and 62 %, respectively. "

>

> *Long term results of pneumatic dilation in achalasia followed for more

> than 5 years.*

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

2094848 & dopt=Abstract

>

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

12094848 & dopt=Abstract>

> " The long term success rate of pneumatic dilation is rather low,

> resulting in permanent successful treatment of achalasia in only 40-50%

> of patients. "

>

> *Long-term results of surgery for childhood achalasia.*

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=9\

422870 & dopt=Abstract

>

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

9422870 & dopt=Abstract>

> *

> Long-term outcome of laparoscopic Heller-Dor surgery for esophageal

> achalasia: possible detrimental role of previous endoscopic treatment.*

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

6332491 & dopt=Abstract

>

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

16332491 & dopt=Abstract>

>

> *Clinical profile and long-term outcome in children with esophageal

> achalasia*

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

5808427 & dopt=Abstract

>

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

15808427 & dopt=Abstract>

>

> *Long-term results of pneumatic dilation for achalasia: a 15 years'

> experience.*

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

6237769 & dopt=Abstract

>

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

16237769 & dopt=Abstract>

>

> *Long-term results of laparoscopic Heller myotomy with partial

> fundoplication for the treatment of achalasia.*

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

6307937 & dopt=Abstract

>

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

16307937 & dopt=Abstract>

>

> *Very late results of esophagomyotomy for patients with achalasia:

> clinical, endoscopic, histologic, manometric, and acid reflux studies in

> 67 patients for a mean follow-up of 190 months.*

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

6432352 & dopt=Abstract

>

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=\

16432352 & dopt=Abstract>

>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Looks like noone responded to you...I am in the same placd with my dad. hope

things work out well!

wyatt

>

> Hello all, I am new to the group and researching on behalf of my father. We're

just starting

> the quest for the best of the best doctor(s) in the spinal stenosis field.

We're in the San

> Francisco Bay area, Santa to be exact, but will consider all options for

surgical

> consultations. Thanks in advance for any/all suggestions for physicians who

specialize in

> this field. Lydia

>

[Guest guest]

Sorry, I didn't see the other post!

>

> Hello all, I am new to the group and researching on behalf of my father. We're

just starting

> the quest for the best of the best doctor(s) in the spinal stenosis field.

We're in the San

> Francisco Bay area, Santa to be exact, but will consider all options for

surgical

> consultations. Thanks in advance for any/all suggestions for physicians who

specialize in

> this field. Lydia

>

[Guest guest]

No I dont know a doctor there but maybe you can help me find an old friend who lives there? Can you email me privately when you get this. Thanks

Thank you Chavez

(510)300-7129(408)943-0838fax shellychavez@... business "We make a living by what we get, we make a life by what we give."- Sir Winston Churchill

From: whatwouldyousay99 <whatwouldyousay99@...>Subject: New to the Group Date: Sunday, June 21, 2009, 10:09 PM

I live in Grand Junction CO does anyone know of a doctor in this area? I want to start the program asap. Thank You!

[Guest guest]

what would you say 99 is that a DMB reference?

Thank you Chavez

(510)300-7129(408)943-0838fax shellychavez@... business "We make a living by what we get, we make a life by what we give."- Sir Winston Churchill

From: whatwouldyousay99 <whatwouldyousay99@...>Subject: New to the Group Date: Sunday, June 21, 2009, 10:09 PM

I live in Grand Junction CO does anyone know of a doctor in this area? I want to start the program asap. Thank You!

[Guest guest]

Tammy

I'm so glad that the stim helps you so much. My name is Sue and I also have RSD

along with several other medical conditions. Unless someone is in chronic pain,

they don't know what you are going through. That's the beauty of this group.

Everyone here knows what the other is going through. We all know what it is like

to live in pain, not be able to do the things we used to do, have our lives

turned upside down, not be able to function, etc. We are here to support each

other.

Sue C

 

________________________________

From: tammytam20052000 <tammytam20052000@...>

Stimulator

Sent: Monday, July 6, 2009 7:14:52 PM

Subject: new to the group

Hello Every one... My name is Tammy and almost three years ago I fell on the ice

and broke my ankle.. I had surgery and been to pt 4 different times which really

hasent helped that much… I was told by my Dr that I have RSD. my Dr sent my to

a pain management Dr...which after trying different kinds of pain pills my pain

management Dr told my about a procedure that was called a spinal cord Stimulator

[scs] well after do some research I decided to go ahead and try it... so after

going through the trial to see if it would work I got relief right away with the

never pain.. So I went back to the doctors 4 days later and told my Dr to

schedule the permanent scs right away... so this past october I had the surgery

done and not only has it helped a lot but after being on cruchets for 19 months

I left the hospital using a walker and now I am using a cane... im not allowed

to drive or work no body really understands me and when i try to explain whats

going on

with me they look at me like im from another plante.. so that's my story and I

would like to make friend with people that understand me... looking forward to

hearing from everyone...

Thanks every one for listening to me...

[Guest guest]

Tammy...ditto on what Sue said.

Deanna

Sent from my iPhone

On Jul 6, 2009, at 7:46 PM, Corn <butterfliesrfree309@...> wrote:

Tammy

I'm so glad that the stim helps you so much. My name is Sue and I also have RSD

along with several other medical conditions. Unless someone is in chronic pain,

they don't know what you are going through. That's the beauty of this group.

Everyone here knows what the other is going through. We all know what it is like

to live in pain, not be able to do the things we used to do, have our lives

turned upside down, not be able to function, etc. We are here to support each

other.

Sue C

________________________________

From: tammytam20052000 <tammytam20052000@...>

Stimulator

Sent: Monday, July 6, 2009 7:14:52 PM

Subject: new to the group

Hello Every one... My name is Tammy and almost three years ago I fell on the ice

and broke my ankle.. I had surgery and been to pt 4 different times which really

hasent helped that much… I was told by my Dr that I have RSD. my Dr sent my to

a pain management Dr...which after trying different kinds of pain pills my pain

management Dr told my about a procedure that was called a spinal cord Stimulator

[scs] well after do some research I decided to go ahead and try it... so after

going through the trial to see if it would work I got relief right away with the

never pain.. So I went back to the doctors 4 days later and told my Dr to

schedule the permanent scs right away... so this past october I had the surgery

done and not only has it helped a lot but after being on cruchets for 19 months

I left the hospital using a walker and now I am using a cane... im not allowed

to drive or work no body really understands me and when i try to explain whats

going on

with me they look at me like im from another plante.. so that's my story and I

would like to make friend with people that understand me... looking forward to

hearing from everyone...

Thanks every one for listening to me...